Doctor Discussion Guide for Adults

Arlene, living with XLH

XLH symptoms can progress over time and it can be difficult to understand how they may be impacting your day-to-day life. The following questionnaire can help you prepare and identify talking points to discuss with your doctor during visits.


Be as honest as you can. There are no right or wrong answers. Complete this questionnaire before each primary care provider and XLH specialist appointment and see how the answers change over time.

Question 1

In the past 6 months, have you had to make any adjustments to your home, work or social life due to tiredness, lack of energy and/or difficulty moving?

Where have you had to make adjustments? (optional; check all that apply)

Please describe the types of adjustments. (optional)


Adults with XLH report osteoarthritis, osteomalacia, enthesopathy and recurrent fractures, which can affect physical function and the ability to do basic everyday activities such as walking, dressing and maintaining personal hygiene.

Question 2

In the past 6 months, how often have you felt recurring or new pain?

Where have you experienced pain? Check all that apply or click the locations on the image of the body. (optional)


In a survey of adults with XLH, nearly all (97%) reported bone or joint pain/ stiffness and 63% reported muscle pain.

Question 3

In the past 6 months, how often have you had to take steps to manage your pain?

Describe how you managed your pain. (optional)


In a survey of adults with XLH, nearly 70% reported that their pain was severe enough to take medication, either over the counter or prescription, at least once a week.

Question 4

Do you have any hearing issues?

Describe the hearing issues. (optional)


Nearly 50% of adults with XLH report having hearing complications such as tinnitus and 34% report hearing loss.

Question 5

How recently have you discussed options for managing your XLH with your doctor?

Describe how your XLH is managed on a daily basis and any concerns you have about XLH management. (optional)

List any additional questions or notes to discuss with your doctor at your next appointment. (optional)


Research is underway to better understand and treat XLH. Be sure to ask your doctor about the latest advancements in XLH management.

Thank you for completing this questionnaire.

The answers you’ve provided may help guide your discussion on XLH management with your doctor.

Please download a PDF of your answers and remember to bring it to the next appointment.